The HIV Battle: Perception and Stories

Written By : DW Staff on June 1, 2012

By Andre Blackman

I was recently on a call with the AIDS.gov team and a group of other noted leaders in the health field. The call event was aimed at developing smarter ways to reach and engage communities of color around HIV/AIDS prevention and education. Each of us had great case studies, resources and personal stories to share about how to make a positive impact in the ongoing battle of the disease in these communities.

One thing we all need to keep in mind: this fight is still very real, still claiming lives and there are still many areas that need change. Sometimes, no amount of technology or marketing can help until the people change. Stigma, oppression and often times misinformation still causes a large amount of the disease’s reach. That needs to change in order for the larger impact to begin.Being a fan of storytelling and film, I recently came across a short documentary from the folks behind the upcoming Deep South film that got me thinking more about these things. More and more, I believe the stories of people will be the key to creating the most change in public health. When perception changes, real change takes place. The documentary takes a look at living with HIV in the rural South – Mississippi to be exact. Take a look:

How intense was that? Moreover, how about the fact that the health department is behind a lot of the problem in her life? Something to think about.

3 Responses to “The HIV Battle: Perception and Stories”

I am an HIV/Aids Nurse Practitioner in Indianapolis. A wonderful patient of mine developed a rare but devastating complication of HIV that causes neurological damage leading to irreversible paralysis. He became paralyzed on his entire left side. He decided to move to Tennessee to be closer to family, and when he left my care his HIV was well controlled, the progression of the paralysis had stopped, and his neuropathic pain was controlled with the help of consults with pain specialists.

When he arrived in Tennessee, he discovered that his care would be fractured, with providers at far-flung distances. He was expected to see an HIV specialist, a primary care provider, a neurologist, and a pain clinic. Being unable to drive,and a hemiplegic, it was a terrible burden on his Aunt to be able to take him to appointments with providers that were distant from each other and not communicating with each other. My patient’s pain became unbearable, and his HIV provider would not even attempt to treat it, telling him it was not an HIV problem but a neurological one.

So in the end, my patient was forced to make the choice to enter a hospice program as this was the only way he could get relief from his pain. He does not wish to die, but has been forced to stop his HIV medicines in order to be made comfortable.

So I ask….is this what ‘right to life’ is all about? Which ‘death panel’ determined that my patient should die? How is this not euthanasia? Is this an example of the ‘greatest health care system in the world’? How ‘pro-life’ is the great state of Tennessee really?

I am heart broken. My patient keeps in touch with me by email. That is how I am following his demise. At least he has relief from his pain.

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